A former architecture student living with severe myalgic encephalomyelitis (ME/CFS) has created a series of 3D room scans to show what life with the devastating disease is like. From the small world that is her bedroom, 26-year-old Katiana has produced the series of images to illustrate how Greece’s dire lack of services for people with her chronic illness is trapping her in an increasingly dangerous situation.
Unconscionably, this is that Katiana’s abusive parents are putting the life of their daughter at enormous risk. Most alarming of all, if things don’t change – and fast – Katiana is scared she’s going to die.
A life ‘full of promise’ lost to ME/CFS
Katiana reached out to the Canary with her story, in what she described as her “last attempt to be heard”. She told us that:
At just twenty-three years old, my life was full of promise. I was an architecture student, an athlete, and a high achiever, on the brink of earning my degree and pursuing my master’s abroad.
Then, the pandemic struck, and everything changed. Ever since, Katiana has been battling the relentless, life-altering symptoms of long Covid and ME/CFS.
ME is a chronic systemic neuroimmune disease which impacts around tens, if not hundreds of millions people worldwide. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
Meanwhile, long Covid shares many pathological overlaps with ME. Both are viral onset illnesses – meaning that they’re typically triggered by a viral infection. Studies have shown already that over 50% of people living with long Covid meet the diagnostic criteria for ME.
To make matters worse, these aren’t the only chronic health conditions Katiana lives with either. Like many people living with ME, she also experiences a number of other comorbidities. This includes mast cell activation syndrome (MCAS), and craniocervical instability (CCI), postural orthostatic tachycardia syndrome (POTS), dysautomnomia, and probable Ehlers Danlos Syndrome (EDS).
Severe ME/CFS strikes
At least 25% of people with the ME/CFS live at the severe end of the scale.
In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
For the last year and a half, this has been Katiana’s reality. She told the Canary that:
My condition has been very severe to the point that I’m in agony and pain everyday. I’m almost entirely bedbound – only getting up to go to the bathroom. This causes a lot of distress, pain, and struggle. I can’t tolerate light or sound and I’m unable to speak most of the time. Doing so makes me worse as I’m in a constant crash, since I’m not able to pace myself.
She described how she lives in constant pain. Katiana wanted to drive home that:
I can’t even bathe or take care of my basic hygiene.
Crucially, severe ME can be fatal – as the recent inquest into the death of Maeve Boothby-O’Neill is a harrowing reminder of. Maeve came up against an uncaring, unequipped, abusive healthcare system in the UK which ultimately killed her. Now, Katiana is afraid that the apathy of the Greek government and healthcare authorities towards people with chronic health conditions like hers will do the same.
Despite the widespread impact of long Covid and ME, she explained to the Canary that there is a significant lack of resources and assistance for those suffering from its long-term effects. A 2021 survey of clinical experts across Europe sought to establish GP knowledge and understanding of ME. It found that:
Widespread disbelief in the existence of ME/CFS was reported as a factor limiting provision of specialist care in Greece.
Largely, this has been her experience too. Notably, she expressed how – much like Maeve and others including Millie and Carla battling the NHS in the UK – clinical care staff have mistreated her during many hospitalisations in Greece’s healthcare system. And like Maeve, Millie, and Carla too, the hospital clinical staff have made her condition significantly worse. Katiana explained that:
I went from moderate ME to severe in a year.
Boxed in from all sides
However, Katiana’s home environment is no safer. Using her architecture skills, Katiana has generated 3D scans of the bedroom in which she ekes out the daily realities of life with severe ME/CFS and her other devastating conditions:
Please share!! ME/CFS kills lives. I'm dying and everyone watches. The photo is edited to have more exposure for you to see. I once 3d scanned buildings as an arch student. Now I guided a nurse (only for 3hrs/day) to scan my room. My prison. #pwme #mecfs #longcovid pic.twitter.com/jSx1qcPVNY
— katiana mekka ❤️🩹🦠 (@katiamek) August 15, 2024
Of course, as for many people living with it, this is her whole world. It’s a stark, but poignant depiction of life with severe ME. Katiana’s cuboid room could be a metaphor for the walled existence, boxed in by intensely debilitating illness and a medical establishment that gaslights, neglects, and seals lives away under a psychologising lid. Or, the repeated rectangular patterns throughout her bedroom could pose as an allegory for the way clinicians try to force multi-faceted chronic illnesses into square-shaped holes.
But Katiana’s haunting images conceal a particular, vital message: her urgent plea for help. Because the Greek government and healthcare system aren’t the only ones putting her life at enormous risk. Katiana’s parents are too. Currently, she is trapped in their abusive household.
She told the Canary how:
My parents use their little financial support as a tool of manipulation, choosing which doctors I can see and refusing to cover the specialists I need. This form of control extends to every aspect of my care, as they deny me access to necessary medical aids like a wheelchair or commode, equating their use with giving up. This forces me to rely entirely on their approval for my basic needs, stripping me of autonomy.
Alongside this, she explained that they consistently gaslight her. She said that they do so:
by dismissing my legitimate health concerns, questioning the severity of my illness, and accusing me of overreacting. They also gaslight my nurse, denying that they do anything harmful, even when confronted with evidence of their actions.
However, their gaslighting is just the tip of iceberg. For Katiana, her MCAS can cause symptoms like hives, swelling, difficulty breathing, fainting, severe gastrointestinal issues, and anaphylaxis. She said that:
Despite having explained this, my parents continue to use products that trigger my symptoms, putting my life in danger.
And disregard for her condition is a recurring theme. Her parents refuse to acknowledge how external stimuli worsen her severe ME. This means they frequently expose Katiana to loud noises which exacerbate her condition. What’s more, they don’t take Covid precautions, putting Katiana at risk of contracting it and further endangering life.
Besides this, they’ve denied Katiana access to a commode, and have restricted her access to a nurse. She cooks suitable food that Katiana can tolerate with her multiple gastrointestinal problems. To date, she has been the only person able to help Katiana. She regularly challenges Katiana’s parents on their abusive, neglectful treatment. However, she’s come up against a brick wall in petitioning them for the necessary environmental adjustments that Katiana desperately needs.
Katiana therefore feels that:
Their care oscillates between neglect and harmful intervention, making my condition deteriorate further. In other words, they’re exhibiting all the characteristics of narcissistic abuse, and with it, making my health inordinately worse.
Ignoring and threatening medical professionals that try to help
Katiana wanted the Canary to see some of her medical reports. These were from the various doctors she has gone to for support. None of these were based in Greece, because she has only found one doctor knowledgeable on ME/CFS in the country. However, her father dismissed and threatened them when they tried to help Katiana.
In the reports she shared with the Canary from multiple international clinicians, including severe ME specialist Dr William Weir in the UK, the “irreversible” impact of her parents maltreatment and abuse, and the fact they’ve stopped her getting crucial treatment, was a recurrent issue they raised.
New York-based ME specialist Dr Susan Levine is one such doctor who has evaluated Katiana’s condition. In her medical report, Levine emphasised that:
Katiana is extremely disabled and can barely walk two steps out of her bed due to her profound fatigue. Furthermore, it can cause her irreversible harm to attempt to do more even on her betters days”
Another, from a neurosurgeon in Barcelona identified the danger of leaving Katiana’s CCI untreated. CCI presents as increased mobility at junctions in the neck and causes a range of devastating symptoms. The specialist has advised Katiana she needs urgent treatment for this, but she’s unable to get there for care. He impressed in his email that Katiana needs the operation “as soon as possible” to:
avoid arriving to a state of irreversible damage.
Despite the comprehensive notes from these international experts, her parents have continued to ignore their advice. Instead, Katiana explained that they have taken the word of doctors that confirm their own preconceptions of her illnesses and needs.
To make matters worse, her father has sought to cut her off from those trying to help her. She explained how he’s threatened legal action against doctors, her psychologist, and organisations who’ve tried to advocate for her needs. She said that:
They are trying to manipulate people into thinking that I am a mental patient.
Severe ME/CFS and narcissistic abuse: a life ‘already dead’
Katiana wanted to make clear that her parents aren’t physically abusive. However, their neglect and psychological abuse has made her life increasingly unbearable. Katiana told the Canary that the stark contrast between her life and her parents’ has made her situation profoundly more distressing:
I feel as if I’m already dead. My parents go on with their lives, completely in denial of the seriousness of my illness. While I struggle to survive each day, they continue to enjoy life without any sense of guilt, as if my suffering doesn’t exist.
My parents act as of what they can see. They’re not asking how I feel and what I experience.
Of course, she isn’t the only person living with this devastating disease whose families’ have gaslighted, abused, and trivialised their condition.
The Canary previously reported on Anna’s appalling situation in Australia. Similarly there, abusive healthcare professionals, woefully unequipped domestic abuse services, and gargantuan gaps in state social care support continue to trap Anna in an abusive household. Like Katiana, her abusers are dangerously worsening her severe ME/CFS by the day.
There are many other anecdotal stories from people living with ME who’ve come up against stigma, disbelief, and active harm from family and friends.
Once again, Katiana’s experience underscores the global scandal that is the abysmal treatment of people living with ME and other stigmatised chronic health conditions.
Katiana summed up the desperate circumstances the lack of state and medical support is forcing her into:
My situation is dire. I desperately need to get away from my family, who have been gaslighting psychologically abusing me even before my illness. Now that I am so ill, that narcissistic behaviour is putting my life in danger.
I want you to tell the world that I’ve tried everything. It has been almost three years. I have a strong will for life but I’m suffering a lot. I’ve asked organisations and people for help, but nobody listens, nobody helps.
For some like Katiana, the dangers of abusive medical care are matched equally by the abuse and neglect of narcissistic family care-givers at home. When neither home, nor hospital is safe, where can drastically chronically ill severe ME patients like Katiana go? Currently, nowhere exists. This urgently needs to change before Katiana, Anna, and many others lose their lives to the society that has abandoned them for far too long.
How you can help
What Katiana needs:
- A carer, nurse, and advocate for at least twelve hours a day.
- A safe place to stay, with an environment appropriate for her severe ME/CFS (low light, sounds, chemical free etc.)
- A specialist or knowledgable doctor
- Financial Support for both her living and medical supplies, doctors appointments, future interventions
Therefore, there are a number of ways people might be able to assist Katiana:
- If you are, or know of a service provider for family abuse specifically for disabled people or other services equipped to help Katiana, please contact her. Katiana has already tried social services. Unfortunately, for patients with ME and long Covid, those organisations can sometimes institutionalise them.
- Support her financially as she tries to access medical supplies, doctors’ appointments, and most importantly, a chance to leave her household with access to hire a full-time carer. You can donate to Katiana’s fundraiser here.
- If you can provide a quiet place to stay, please contact her.
- If you know of any specialist or doctor who is willing to advocate for Katiana, please speak with them and let her know.
You can reach Katiana via her profile on X.
Featured image via Katiana/the Canary
